Annual Report of Tuberous Sclerosis Australia 2016/17

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Find out about the achievements of this small organisation, our plans for the future and all the people who made it possible.

Annual Report

Together we can create a better life and more

hopeful future for every individual with TSC

1


Tuberous Sclerosis Complex (TSC)

TSC affects more than 2000 individuals in Australia and thousands more

carers, families and friends who live with the impact of the disease.

TSC tumours can grow in any organ of the body, commonly affecting

the brain, skin, heart, lungs and kidneys. TSC can cause epilepsy,

developmental delay and autism. There is no known cure for TSC.

TSC is not just TSC

Epilepsy Autism Kidney

tumours

Lung

disease

... and

more

and then there`s the fear.

We have no crystal ball that can predict how any individual will be

affected by TSC. This fear can be crippling.

Financial

Education

& Work

All dimensions of wellbeing

can be affected by TSC

Emotional

Spiritual

Time

Physical

Social

Although the diagnosis of TSC is given to

an individual, it ripples through the family,

community and our whole society.

2


uberous Sclerosis

ustralia a (TSA)

TSA works to connect, inform and empower people affected by

tuberous sclerosis complex as we work towards a cure for TSC.

What We Do

• Ensure Australians with TSC

have access to the best possible

healthcare

• Provide up to date and accurate

information to all Australians

with TSC

• Support individuals and families


face the challenges of TSC alone

• Champion an active research

program in Australia that works

towards a cure for TSC

Our Values

• Diversity - we recognise everyone`s unique

experiences and contribution

• Excellence - our services and activities are of high

quality

• Equity - we aim to provide services that are accessible

by all people with TSC, wherever they live in Australia

• Openness - our decision making and

communications are clear and transparent

• Independence - we value our independence and are

accountable to TSA members

• Partnership - collaboration with other organisations

and individuals is critical to achieve our vision

Our Team

• Debbie Crosby President

• Patrick Norris Treasurer

• Alison McIvor Secretary

• Adish Chandra Committee Member

• Michael Jones Committee Member

• Michelle Purkiss Committee Member

• Georgina Schilg Committee Member

• Clare Stuart General Manager

• Kate Garrard Fundraising and

Communications Lead

Our Team of Medical Advisors

• Dr Sean Kennedy nephrologist at Sydney Children’s Hospital

• Dr John Lawson paediatric neurologist at Sydney Children’s Hospital

• Dr David Mowat clinical geneticist at Sydney Children’s Hospital

3


ship

eadership

eport

Debbie Crosby, President

and Clare Stuart, General Manager

It has been another amazing year at Tuberous

Sclerosis Australia and all made possible by our


part of running TSA is raising the funds needed to

achieve our goals. We are so grateful for each and

every person who chooses to donate to TSA, host a

fundraising event or support one of our TSC Heroes

in events around Australia.

This year saw a major milestone in our TSC Heroes

fundraising team. Formed in 2014 by the Place

family, the original TSC Heroes came together

again in November 2016 at the Western Sydney


a half ironman distance triathlon, joined by many

of his family and friends along with TSC dads Elliott

Cunnew and Anthony Crosby. This event raised over

$30,000 and took the total raised by TSC Heroes to

over $100,000.

These funds have allowed TSA to maintain and

improve our information and support services.

These include improving the availability of our

TSC Information Service, the only service of its

kind in Australia allowing people living with TSC

to call for accurate information, connect to health

professionals who know about TSC and someone to

listen who knows what life with TSC is like.

We’ve also been able to update our information


continues to be one of the hardest aspects of TSC

to live with. 90% of people with TSC experience

seizures and anti-epilepsy medication alone is often

not able to provide relief. Ongoing research into

medicinal cannabis, mTOR inhibitor medicines and

improvements in epilepsy surgical techniques have


with TSC. Our April 2017 issue of Reach Out brought

up to date information on these new treatment


hundreds of TSC families and health professionals.

This year we also received funding from Novartis


go to Dr John Lawson for generously giving his time

to do this session. It provided a great overview of

medicinal cannabis research and issues and allowed

participants to ask questions directly from an expert


in this area. The ability to participate in online events

and watch video recordings at a time convenient

to them means more people in more parts of our

big country can access accurate and up to date TSC

information.

We took time this year to refocus on how we can


need of Australians living with TSC. Our 2016 survey

emphasised that day to day life with TSC is full of

challenges including accessing TSC expert medical

care as well as mental health, education and disability

support. Despite major advancements in the medical

treatments available for TSC, there is so much more

we can do. We have refreshed our strategic plans to be

more ambitious and this annual report describes our

key priorities. The management committee is excited

about this next phase for TSA and the ways that we

can help to make the lives of people with TSC better


future.

Our organisation has grown and changed since it

was established in 1981. At TSA's core has always

been a dedicated group of volunteers. Thank you to

our management committee members, our regional

contacts and our dedicated fundraisers. We are also

so grateful to have the ongoing support of our TSC

Professionals Network who give their time to our

projects including presenting at education events,


reviewing our publications. This year we welcomed our


fundraising knowledge and experience to our team.

Having the resources to complete this work is the

largest challenge we have. We are passionate about

increasing the number of people and organisations

involved in our cause. If you can help us to talk to a

new group of potential supporters, we’d love to work

with you. Thank you again for supporting TSA this

year. We’re proud of what we have accomplished and

look forward to the future.

4


SA'S

chievements

A summary of the

achievements of

the Australian TSC

community since TSA`s

formation in 1981.

TSA founded

as Australasian

Tuberous

Sclerosis

Society

First issue

of TSA's

regular

magazine

Reach Out

published

First social

picnics held for

families with

TSC

First family

conference

weekend held

in Sydney with

attendees

from all around

Australia

National

Roadshow

brings up

to date TSC

information to

three Australian

cities

TSA is a founding

member of

Tuberous

Sclerosis Complex

International

TSC clinic

opens at Sydney

Children's

Hospital

bringing

together

specialists


disciplines

to provide a

whole patient

approach to

medical care

Produced You

Are Not Alone


the stories of

four Australian

families living

with TSC

TSA funds


genetics project

providing

genetic testing

for TSC and

improving our

understanding

of the genetic

basis of the

disease

2nd Australian

TSC clinic opens

in Brisbane

at The Mater

Children's

Hospital

First TSC two

day combined

meeting with

Sydney

Children's

Hospital

30th

Anniversary

Gala Ball held in

Sydney, raising

over $80,000

Australia site

in Exist 1,

international

clinical trial into

new medicines

for TSC

The inaugural

Elizabeth

Pinkerton

Memorial Award

is given to Dr

David Mowat,

to recognise


to improve

the lives of


families in

Australia

1981

1982 1986 1990 2006 2007 2011

2017

2016 2015

2014

2014

2013

2012

Launch of

TSA webinars

providing

updates on new

treatments and

discoveries

Four Australian

sites participate

in 1st

international

clinical trial

of medicinal

cannabis for

epilepsy in TSC

TSA conducts

second survey

TSC family

survey to gain

further insights

about how


family and how

TSA can best

support them

TSC Heroes

reach $100,000

in donations for

TSA

Development

of TSC

professionals

network

Published the

100th issue of

TSA's Reach Out


issue 1982

Combined

national

medical

and family

conference held

in Sydney

The TSC

Heroes team is

founded, uniting

fundraisers

around Australia

TSA provides

funding

to Sydney

University for the


health

economics

study, examining

out of pocket

health care costs

of families with a

child with TSC

Lady Cilento

Children's

Hospital in

Brisbane joins

major European

clinical trial

preventing

the onset of

seizures in

infants with TSC

and reducing

the rates of

developmental

disabilities.

TSA completes

the TSC Family


of its kind in

Australia and

New Zealand

First Perth TSC

Educational

Conference

Australian

Pharmaceutical


(PBS) funds

mTOR inhibitor

medicines, a

lifesaving new

treatment for

brain and kidney

tumours in

TSC. TSA led

the consumer

advocacy project

to help the

decision makers

understand

the impact this

medicine has on

the lives of those


TSC

Melbourne TSC

Information Day

Resource

directory project

is completed,

providing

detailed

information

about TSC

tailored to

Australia for the


TSA provides

over $200,000

in funding for

clinical trial of

a topical cream

to treat and

prevent TSC

skin tumours

at Sydney

Childrens

Hospital

5


The impact of your

support on our

information service

50

TSC families helped through our TSC Information

Service

15,000

43

Visitors to our website each year,

learning about TSC

397

Daily readers of our TSC

Information Pages

Members supported through

our online discussion group

Topics explored in our online discussion group

76

658

Posts in our online discussion group

People viewed our webinar on new

treatments for epilepsy in TSC

125

4,510

Views of our TSC education videos

2 7

Issues of Reach Out

published, exploring

epilepsy and digital health

Informal gatherings around

Australia for people with TSC

and their families

6


Gorgeous Greta

is 9 years old and has tuberous

sclerosis complex. TSA have provided life changing

information to Greta`s family that has helped Greta

to live her best possible life, despite their journey


Bridie, Greta’s mum was told that her unborn baby

would be “born with no quality of life at all and they

should start to think about palliative care”. The family

were beside themselves with shock and sadness. “This

doctor’s misinformation made that day the worst day of

my life. It was just horrible.”

TSA’s hope for the future is that no family should be

given this kind of incorrect information which causes

so much unnecessary fear and anxiety. Our focus on

providing information and support to families can be

transformative. Without the right information, Bridie

says she may have terminated the pregnancy.

Thankfully Greta’s family was introduced to a wonderful

volunteer from Tuberous Sclerosis Australia, Narelle.

“Getting the right information changed everything”

says mum Bridie. “Narelle’s daughter Lily is very similar

to Greta but a few years older. It’s been invaluable to

talk to Narelle during the bad times and to know that

they have been through similar things. It’s important

to me to know that there is someone there who I can

call. No matter how much your family and friends care

and love you, they don’t know what it is really like. The

connection with another parent who understands has

been amazing, and I will be forever grateful to TSA for

their volunteer program and providing us with the right

information about TSC.”

TSA’s focus on helping link families with TSC to expert

doctors and to other families who have experienced

similar things is invaluable. “Without TSA, we would not

have the support and information we need to get the

best care and treatment for our daughter Greta.”

Today Greta is exceeding all expectations and loves

singing, dancing and horse riding and is learning

more each day.

“Our family has been empowered to best manage

our daughter’s healthcare because of TSA’s online


right places and get involved with emerging clinical

trials. The TSA website has been a wonderful tool for


online information service we have provided it to our

GPs and other doctors so together we can go through

treating guidelines to make sure Greta is getting the

best treatment she can.”

7


The impact of your

support on improving

health care

Over the past year TSA has continued to work in partnership with government, medical

specialists, researchers, and our international counterparts to improve healthcare for all

individuals living with TSC.


Advisory Committee (PBAC), who make decisions on listing medicines on the pharmaceutical


inhibitor medicines since their PBS listing in 2013. Australian government funding of this medication

to treat TSC tumours in the brain and kidneys is improving lives.

“The PBAC thanked Tuberous Sclerosis Australia for the balanced and helpful advice provided in their

consumer comment. The PBAC noted that Tuberous Sclerosis Australia spoke of the value of the PBS

listing of Everolimus for people with TSC while also noting limitations in the use of this medicine.”

We continue to work with our valued TSC clinics around Australia. We partnered with Lady Cilento

Children’s Hospital in Brisbane to hold a specialised clinic for parents of younger babies with TSC. This

event provided them with a safe space to share

2

their challenges and fears and form connections

with each other. TSA now hosts an online group

for these parents to foster these connections.

Australian

projects presented

at International TSC

Research Conference

We also celebrated the launch of the Adolescent

and Young Adult clinic at the Bright Alliance,

part of Sydney Children’s Hospital.

We collaborated with the TSC clinic team and

the hospital pharmacy to have treatment for

the skin signs of TSC funded by the Queensland government. Combined with hospital funding in

Melbourne and Perth, many more Australians can access this cream at minimal cost.

Our TSC Professionals Network includes 40 medical

specialists around Australia with experience in TSC. This

allows people with TSC to seek out doctors with up to

date knowledge and experience. We will continue to

grow and strengthen this network in the future.

Four Australian TSC researchers attended the 2017

International TSC and LAM Research meeting in

Washington DC, USA. Their work reported on children

with TSC to better understand brain tumours in TSC

9

Australian sites in

international TSC

research collaborations

and the importance of early intervention. Australian research teams continue to collaborate with

international studies into early childhood development, epilepsy treatment options and the best ways

to manage skin tumours in TSC.

8


When Oscar was seven months old, he started

having seizures. Multiple tumours found in his tiny

heart soon led to a diagnosis of TSC. Oscar, now

15, lives with many of the signs and symptoms of

TSC. This includes tumours in his brain, kidneys,

skin, eyes and heart, and has been diagnosed with

autism and intellectual impairment.

Nearly two years ago Oscar’s scans showed multiple

large tumours in his kidneys. His team originally

thought that these may be cancerous.

“Things got out of hand by way of jumping into a scary

diagnosis too quickly. We have very good doctors here

but, unfortunately, not many have had experience with


It was only after a second opinion from TSC expert

doctors was sought that the cancer diagnosis was

ruled out and Oscar was able to avoid aggressive

treatment and kidney dialysis. Oscar started treatment

with a mTOR inhibitor medicine, Everolimus.

“The medicine has allowed Oscar to live a life without

the need of dialysis and has given him a better lease

on life. He goes to school and does all the normal

things. We know the tumours are stable in both his

kidney and brain, and his kidney function is stable, so

the medicine has bought us time. In addition, we’ve

seen improvements in Oscar’s communication and

thinking as well as his skin tumours.

Our family is very aware of how expensive this

medicine is and how fortunate we are to have this

medicine available to us in Australia. We are grateful

to the work done by Tuberous Sclerosis Australia to

ensure decision makers understood the importance

of funding this medicine on the PBS. Our expectation

is that this medicine will help Oscar to remain stable

until the next treatment is discovered.”

Oscar’s story illustrates the importance of health

professionals having up to date knowledge of TSC

and how the outcomes of TSC research are changing

lives and improving the health of people with TSC.

We`re proud of our achievements in having this

medicine funded under Australia`s PBS and will

continue to give TSC patients a voice by talking

directly to decision makers in our health system.

9


he future...

ure...

Advancements in

treatments and early

intervention bring hope

for the future.

TSA will persevere in our goals to improve the future for all Australians with TSC. We will

improve healthcare, champion research and enhance information available to positively


Our immediate focus for the future is to:

• Improve the distribution of information

> Create a new diagnosis resource: we will

ensure families have accurate answers and


days following a new diagnosis of a loved one

> Develop an education resource for

teachers: we will foster better understanding

and support for children with TSC during their

schooling years by improving information


> Generate an information pack for GP`s with a

patient with TSC: will give GP’s access to the world

standard healthcare guidelines that they require to ensure

their patient with TSC has the best possible treatment and follow

up care plans

• Improve healthcare for all Australians with TSC

> Expand access to treatments: Further improve access to

new treatments such as topical mTOR inhibitor treatment for

all Australians who need it

> Increase our professionals network: Expand membership of

our TSC Professionals Network so that all Australians with TSC can

see doctors with up to date TSC knowledge and experience.

“I found

that school staff just didn`t

understand the complex nature

of the condition. They focused on the

fact my son was autistic as they received

so much info on Autism Spectrum Disorders

these days but didn`t understand all the other

things that come with TSC that may affect

his ability to learn such as seizures, sleep

disorders, medication side effects not to

mention anxiety and depression.“

Kaarin from South Australia

whose son Conner

has TSC.

> Develop new multidisciplinary models of care: TSA will continue our work supporting the

development of best practice multi-disciplinary models of health care for people with TSC

10


Overcome barriers: Identify barriers to adoption

of the TSC Management guidelines in Australia

and ways these barriers can be overcome

• Champion research here in Australia

> Collaborate: Work together on

international research ensuring

Australian sites participate in clinical

trials for new treatments

> Strengthen relationships: Develop and

strengthen relationships with Australian

researchers and continue to grow our

Australian community of TSC researchers.

> Grow Australia's TSC research: We will

formulate a research plan for TSC in Australia

and collaborate with researchers and funding

bodies to expand Australia's TSC research.

“Attending TSA`s

Melbourne Information Day

made me feel very fortunate to have

access to the TSC clinic at the Sydney

Children`s Hospital in Randwick. We just

assumed everyone with TSC had access to this

level of care. I learnt this isn`t the case for most.

It must be so much harder for families to get the

help they need and see all the doctors without this

clinic. I really want to thank TSA for their hard work

advocating on behalf of TSC families to create this

clinic that brings together all the TSC experts in

one place. We get such good medical care for

our child because of this TSC clinic.“

Angela, mother of a 10 year

old boy with TSC.

“We`ve come such a long

way in understanding TSC.

We`ve changed lives through genetic

diagnosis, more accurate surveillance

and new treatments. But there is still

so much more to understand, especially

anxiety, challenging behaviours and other

neuropsychiatric aspects of TSC. We need to


momentum we already have.“

Patrick, grandfather to Liam

who has TSC.

We will rely on your

continued support and

generosity to ensure a better

and brighter future for all


“TSC is a complex

disease and it can be


quickly to a teacher. Teachers need to

understand that while every student with TSC

is different, they are at risk of having problems

with executive functioning, sustaining attention


a diagnosable intellectual disability. Helping teachers

to understand this as early as possible and to become

part of the TSC team for that student can make a

real difference. I look forward to working with TSA

on this project.“

Vanessa Sarkozy, Developmental

Paediatrician at Sydney Children’s

Hospital and part of the TSC

Clinic team.

11


hank kyou

Together, we have had a major impact on the TSC Community. Thanks to your generosity TSA


of pride for the work we have done supporting individuals living with TSC now and for the

future. This wouldn`t have been possible without your help.

TSC Heroes

Thank you to all the TSC Heroes who raised funds and

awareness for TSA by joining in these events.

Western Sydney Ironman 70.30

Heroes, was proud to bring the team back together for a half

ironman: 1.9km swim; 90km bike ride and 20km run. They raised


Anthony, are fathers of children with TSC.

City2Surf 2016 Belinda Allchin, who has two sisters with TSC, ran in

Sydney’s iconic City 2 Surf in August and raised $791.75.

Bridge to Brisbane 2016 TSA supporters, led by Isabella and

Miranda, took on the Bridge to Brisbane Day in August and raised $715.

#imovebeCAUSE Peta and Christy moved every day in May and

raised almost $200.

TSC Champions donate $6,014

Our regular givers, known as TSC Champions, make monthly

contributions to TSA. These are vital donations we can rely upon

each month to carry out our work.

TSC Members contribute $11,436

We are incredibly grateful to our Gold, Silver and Bronze members

who each year give so generously by renewing their membership

and making a valuable contribution in support of TSA.

Special Events

Our Suppliers

Pictured above: TSC Heroes in

the 2017 Bridge to Brisbane

We wish to thank all our

generous partners who

work with us to provide free


goods and services.

Belinda The Design Web

Anchor Web Hosting

NextPrint in Castle Hill, NSW

Magazines By Design

Orange Clothing

Company

Caz Nowaczyk for your

graphic design help over

the last three years

Lizzies Lunch 2017 Raised over $16,000. That’s

our biggest and best yet. Enormous thanks to Sue

and Ross Pinkerton for being the driving force in

running this successful fundraiser each year.

Thanks to the generosity of Diana Ferrari just

under $1,000 was raised at a fabulous shopping

night fundraiser held at the Diana Ferrari Castle

Hill store.

Bunnings AFL Party The team at the Bunnings


celebration to raise funds for TSA. We’re grateful

for the $2,269 they raised.

Daphna`s 40 for FOURTY Celebrated Daphna


$2,000 to TSA’s work.

In memory of Sienna Goong Over $1,800 was

donated to TSA to honour Sienna’s life. Sienna

will be forever in our thoughts.

12


Our Partners

TSA works closely with many organisations to ensure

individuals with TSC in Australia have access to

world-class treatment opportunities and information.

We are an active member of TSC International and

regularly collaborate with TSC NZ. We advocate for

people with TSC through our work with the Consumers


We are thankful for our collaborative partnerships with

these organisations.

Regional

Contacts

Our regional contacts work

with local families to share

information and experiences.

They help make sure everyone

with TSC has someone close by

they can turn to.

• Sally Nicholson New South Wales

• Dawn Bowra Australian Capital

Territory

• Nicole Stone Western Australia

• Fiona Hiatt Queensland

• Christy Herbert Queensland

• Fiona Crocker Queensland

• Narelle Kerr

• Alison McIvor

• Georgina Schilg Tasmania

Volunteers

To all our wonderful volunteers around Australia, what

would we do without you! Special mentions to Teresa

Llewellyn-Evans, Editor of Reach Out and Filipa Ottley, for

her assistance with risk management.

We couldn`t do what we do

Our TSC Families

without you.


by TSC who come along to our educational events, picnics and fundraisers and support our work by

sharing your experiences with us. You help inspire and motivate people to support us – thank you so

much! We are also incredibly thankful to all the families who share their stories and photos with us.

Your willingness to share your journey helps others know they are not alone in their experiences.

Our TSC Professionals Network

Thank you to all the medical specialists who worked with us to

improve and grow TSA’s information and support services this

year. We couldn’t do it without you!

This year we recognised the dedication of Dr Simon Harvey to

his TSC patients and their families by awarding him the 2017

Elizabeth Pinkerton Memorial Award. Dr Harvey is a paediatric

neurologist and epilepsy specialists at The Royal Children’s

Hospital in Melbourne and has an active research program into

surgical treatment options for children with TSC and epilepsy.

Donations

We would like to thank each and

every donor who has so kindly

supported TSA. Every dollar no

matter how big or small helps.

Pictured above:

13


ur Donors

TSC Champions

Belinda Allchin,

matched by

Macquarie Bank

Foundation

Aunt Ivy’s Laundry

and Dry Cleaning

Peter Clisdell


Andrew & Emily

Goldstiver

Hayley and David Hill


Sue Mason

Sally Nicholson &

Elliott Cunnew

Jennifer O'Donoghue

Catherine Panich

Robert Pinkerton

Melissa Rologas



Steve Walker &


Membership contributions to Tuberous Sclerosis Australia

Gold Membership

Leiel Bell

Dawn Bowra

Peter Clisdell


Debbie Crosby

Joanne Crosby

Rosemary Dow

Clare Dowd

Shirley Faravoni

Lachlan Foster


Gwynnydd Jones


Malcolm McLean


P Mercer

Rebecca Mitchell

David Mowat

Patrick Norris

Julie Osborne

Shirley Peipman

Steve Penniment

Sue Pinkerton

Michelle Purkiss


Scott & Georgie

Schilg

Marianne Somerville

Loren Wakeley

Robyn Walker

Catherine Wiles

Sue Williamson

Silver Membership

Dean & Elizabeth

Bartels


Lucy Di Falco

Peter Hennings

Fiona Hiatt

Alison McIvor

David Meredith

Emma Morris

Joelle Neville

Rebecca Salomons


Bronze Membership

Fiona Crocker

T Curtis

Chris Doyle

Christy Herbert


Gary Lee

Frank Martin

David Matheson

Lachlan McArthur

Faye McLean

May Mills

Beverley O'Reilly

Peta Peduzie

Noah's Ark Centre of

Shoalhaven

Graeme Shaughnessy

Claire Young

Donors

$1000 and over

Lloyd English


Michelle Stark

$500 and over

Frederick Alexander


Piret Braine

Lisa Chan


Robert Groneman


Lisa Liebman

Barbara Marneros

Julie Osborne

$100 and over

Community of

1 O’Connell Street

Luyun Bai

Heather Bolte

Maryanne Brooks

Stephen Brown

Sandra Capper

Sue Cumming

Janis Daley

Pam George





John Lee

Alan Malsher

Sue Mattinson

Alison McIvor



Orange Young

Professionals

Maria Pascalis

Chirag Patel

Lindsay Penson

Sue Pinkerton

Redback Conferencing

Martin Robinson

Gayle Rockstroh

Wendy Rose

Carolyn Sakoulas


Anastazia Sowter

Samantha Stone

John Wilson

Jay Yardi

In honour of

Alana Crosby

$500 and over

Aurelien Domont


Barbara Marneros

Christina Savvides

$100 and over


Debbie Crosby

Dina Floros


Maria Pascalis

Sasha Savvides Paps

In memory of

Sienna Goong

$500 and over

Lachlan Foster

$100 and over

Bayside Respite Care

Association Inc

14


In honour of

Oliver Lumby

$100 and over

Mary Dolan


In support of

Lizzie’s Lunch

$100 and over

Manjul Agarwal

Paul Cini


Allan Stuart

Brendan Stuart

Erin Stuart

Judith Trotman

In support of the

TSC Heroes at Western

Sydney Ironman

$500 and over


Tom Brennan

Tom Chidiac

Fleming Dynamics

Shervin Fathiniai

NOS Group

Linda Goldstiver

Felipe Henz

Grant Tokum

$100 and over

Carla Alzamora

A.C. Asphalting

Harald Atkinson

BPsych Clinic

Paul Baker

Jana Bogunovic

Jonathan Bayl

Camila Barp

David Bryson

Nick Bowden

Nada Buckley

Carlingford North

Pharmacy

Adam Carpenter

Alex Catteauu

Anthony Crosby

David Cowan

Tracey Cools

Elliott Cunnew

Jenny Cox


Michael Chevalier

Davis Ferrari

Constructions


Brendan Dwan

Shannon Doyle

Ilker Esener

Dina Floros

Paul Falkenstein

Robert Fowler

Andrew Goldstiver

The Gardenmakers

Luiz Goncalves

Prashant Gupta


Anthony Jamhour

Belinda Hamlin

Jennifer Hughes

Myrna Hitchcock


Neil Hardy

Liz Hewson

Monica Juhart

Bruno Jenel

Robert Johns








Enguang Lee

Philip Lee

Mark Lomax

Rob Landsberry

Giuliano Lot

James MacDonald

Jeanette Maynard

Joumana Manjah

Mark Metcalf

Roberta Meenahan

Sue Mason

Pete McLean

Phil Murray-Walker

Timothy Newing

Hit Cafe North

Narrabeen



Anderson Niomi

Logan Nerio

Jochen Nass

Mark O'Connor

Bruno Panno

Carolyn & Rod Place

Colin Pinkerton

David Porter

Murilo Pinamoura

Nick Pinkerton

Michael Pinkerton

Sue Pinkerton

Paul Piraner

Leigh Rust

Sherolin Santos


Elaine Shuter

Emmanouil Spanos

Erin Stuart

Michael Semple

Ara Sahagian

Pete Short

Greg Tiddy

Michael Tong

Denise Thomas

Sally Nicholson

Wendy Ward

Hamish Wakes-Miller

Alison Wakes-Miller

Joanne Wright

Josh Wander

Tracey Walker

Chris Wilson


Conditioning





George Yacoub

In support of the

TSC Heroes at Run

for a Reason in Perth

$100 and over

Hilary Francis

Revel Loughlin

In support of the

TSC Heroes at

City2Surf in Sydney

$100 and over

Belinda Allchin

Irene Christie

Natalie Coleman

Dance 4 Fun

Daniella Dimaris

Fiona Gleeson

Christina Lekovski

Jo Morrison

Miracles on Russell

Rob Ryan

The Pines Family

Practice

In support of the TSC

Heroes at Bridge to

Brisbane

$100 and over

Chris Bowers

Gary Bathgate

Cassie Eivers


Brian Sainsbury

We`d like to thank everyone who made a contribution to TSA this year. We are grateful for

each and every gift TSA received. We have chosen to list above only donations over $100,

because there were just too many of you to include each of you by name.

15


esults

Overview


healthy reserves.

This year we`ve invested heavily in development. The major increase in expenses in this category

is due to hiring our second staff member. We`re spending time, and therefore money, getting the

foundations right so that we can grow TSA to further our mission in the future. The revenue this

investment will generate will occur in future years. We will continue to look for ways to reduce

costs and keep our costs of fundraising as low as possible.


established an excellent working relationship with us and ensured that we are compliant in payroll,


provides secure multi user access for employees, bookkeepers, committee members and auditors.

Our investment policy is conservative. We invest solely in term deposits currently across Macquarie

Bank and Bank of Queensland. The maturity dates of our deposits are staggered through the year

so that we always have funds coming available to meet unforeseen needs.

The accounts for 2016/17 were audited by Mark Mortimer (Registered Auditor No. 1942). A copy of

his report is available at https://tsa.org.au/about-us/annual-reports/

The accounts of TSA align to the National Standard Chart of Accounts published by the Australian

Charities and Not-for-

Our work with pharmaceutical companies

Since 2011, TSA has collaborated with Novartis

and other pharmaceutical companies in a

number of ways. This year we did not receive

any new project funding from the medicines

industry. TSA interacted with the industry in

the following ways:

• We delivered our online education events

project. Novartis provided grant funding for

this project during 2015/16.

• Clare Stuart travelled to the TSC

International (TSCi) meetings and

International TSC Research Conferences

held in Lisbon, Portugal and Washington

DC, USA. TSCi travel funding is provided by

Novartis.

• As a part of TSCi activities, TSA received

project funding from Tuberous Sclerosis

Alliance (USA). Tuberous Sclerosis Alliance

receives funding from Novartis on behalf of

TSCi.

Our policy on working with pharmaceutical

companies describes how we maintain our

independence and integrity. This policy is

available on our website or can be provided on

request. We encourage you to contact us for

more information.

16


Financial statements

Balance Sheet as at 30 June 2017

ASSETS 30 June 2017 30 June 2016

Bank

General Cheque Account $27,612.48 $29,104.91

Savings Accounts $28,049.58 $66,986.06

Term Deposits $239,216.60 $182,675.35

Total Bank $294,878.66 $278,766.32

Current Assets

Accounts Receivable $0.00 $15,000.00

Sundry Debtors $3,160.36 $0.00

Total Current Assets $3,160.36 $15,000.00

Total Assets $298,039.02 $293,766.32

LIABILITIES

Current Liabilities

GST -$175.70 -$21.48

PAYG Withholding Payable $234.00 $0.00

Provision for Annual Leave $3,489.02 $0.00

Rounding $0.00 $0.25

Suspense $0.00 -$438.24

Trade Creditors $0.00 $335.23

Unpaid Expense Claims $1,615.63 $126.50

Total Current Liabilities $5,162.95 $2.26

Non-Current Liabilities

Sydney University Out of Pocket Expenses Study $0.00 $2,745.00

Total Non-Current Liabilities $0.00 $2,745.00

Total Liabilities $5,162.95 $2,747.26

Net Assets $292,876.07 $291,019.06

EQUITY

Current Year Earnings $1,857.01 $132.49

Retained Surplus $291,019.06 $290,886.57

Total Equity $292,876.07 $291,019.06

17


Financial statements

: Year Ended June 2017

30 June 2017 30 June 2016

INCOME

Donations Received $72,272.09 $50,034.10

Grants Received $5,376.00 $26,150.00

Sales of Goods $329.60 $709.50

Sitting Fees $791.98 $0.00

Event Income $24,269.71 $25,261.00

Membership Contributions $6,222.34 $7,260.38

Other income $11,117.02 $3,967.72

Total Income $120,378.74 $113,382.70

$120,378.74 $113,382.70

OPERATING EXPENSES

Advertising and Promotion $1,430.56 $3,002.38

Information Technology Expenses $2,718.68 $2,464.73

Insurance Expense $2,023.17 $2,576.16

Postage, Freight and Courier $2,456.40 $843.90

Printing & Stationery $5,260.98 $3,308.92

Publications and Information Resources $3,796.59 $3,713.37

Research Grants Awarded ($2,745.00) $0.00

Telephone, Fax and Internet $1,747.03 $1,025.24

$2,425.16 $1,119.36

Travel & Accommodation $6,953.44 $18,130.87

Accounting and Bank Fees $9,285.92 $4,651.05

Sundry Expenses $3,020.95 $1,374.20

Fundraising and Event Expenses $15,513.93 $30,818.40

Salaries and Wages $64,633.92 $40,221.63

Total Operating Expenses $118,521.73 $113,250.21

$1,857.01 $132.49

18


Where funds came from

Community

Fundraising

35%

Donations

24%

Grants

4%

Did you know?

During this year, TSA’s education and

support work was supported by a team

of volunteers. This includes Debbie

Crosby, who answers many of the TSC

Information Service calls as well as our

regional contacts around Australia. Their


statements.

$100,000

$80,000

$60,000

$40,000

$20,000

Investments

9%

$32,000

2012/13

Members

8%

Fundraising Revenue

$49,000

2013/14 2014/15 2015/16 2016/17

Revenue from fundraising activities including direct donations, membership contributions, fundraising

events and community fundraising activities

$90,210

How funds were used

Research and

Advocacy

8%

Events

20%

Accountability and

Administration

32% Information

and Support

23%

Development

37%

$77,254

$96,542

Descriptions of these

categories

Accountability and administration

The costs of running the organisation



to the TSA management committee. This

year we have invested additional time in


TSA’s future growth.

Research and Advocacy

Time spent working with policy

makers in health and disability to

improve the care available to people

with TSC. Expenses associated with

encouraging TSC research in Australia

and supporting recruitment into various

studies.

Development

The time to support community

fundraisers and organise TSA-run

fundraising events and campaigns.

This includes promotional and thank

you materials and fundraising team

uniforms. This year we have invested in

improvements to how we fundraise and


in future years.

Education and support

Costs associated with providing


TSC and to Health Professionals. This

includes all costs associated with our

education events, the TSC Information

Service, writing and updating our

TSC information pages, our resource

directory and publishing Reach Out.

19


There is still so much we need to do to improve the lives


Cover photo: Eryn, Matilda and Michael

Budgen from Victoria. Matilda lives with TSC.

Pictured above:

Tash run the 2017 City2Surf

Phone 1300 733 435

Website www.tsa.org.au

Email info@tsa.org.au

Facebook facebook.com/AuTSC

Mail 18 Central Rd, Beverly Hills NSW 2209 Australia

ABN 20 681 174 734

Deductible Gift Recipient Status: DGR1 and Public Benevolent Institution (PBI)

Registered Charity CC25313

CFN 13968

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